Saturday, May 29, 2010

Hi everyone! Lisa M. here. I know you're all wondering what's going on. Well, Jason, Nicole and the kids are still in limbo. The transplant team in St. Louis is willing to take a look at Wrenn, but they'd like her to be a little bigger before she flies. She weighed in at 6 pounds 10 ounces on Thursday and they'd like her to be at least 8 pounds. In addition, she is fairly stable - her oxygen levels are fairly constant and she has not yet needed to be put on a ventilator. In that sense, she's doing fairly well compared to many other babies with her disease. They'd like to wait and see what happens. If she takes a turn for the worst and needs the ventilator, she may be sent to St. Louis quickly. However, if she is able to continue to do well with the supplemental oxygen and no vent, she may be in Orlando for a couple of weeks, growing bigger and stronger.

The fact that Wrenn is doing so well without a ventilator is great news. When she flies, she will have to go on a ventilator, and it's unlikely that she'll come off before transplant. The longer she stays off, the better the chances of something surprising and miraculous happening. On the other hand, this is difficult for the Parris family, not knowing what tomorrow brings.

Nicole and Jason are working on a post to share with you. I can tell you that they are extremely grateful for the outpouring of love and support over their very special little girl. You are all so amazing.

Wrenn's Baby Breath Fund

Click here to DONATE through the National Transplant Assistance Fund. Any help you can give will go directly towards Wrenn's medical expenses. Thank you!

Wrenn's Story

Wrenn was born on April 14, 2010. She was a little early, but not alarmingly so, and at 18 inches long and just under six pounds she was pink and pudgy and looked to be the picture of newborn health.

Unfortunately, Wrenn quickly developed breathing difficulties and needed full-time oxygen or her little lungs would collapse. Doctors suspected that Wrenn might have a rare genetic disorder called Surfactant Protein Deficiency.

Shortly after her birth a series of tests were run, and on her one month birthday her parents found out that Wrenn does, indeed, have the incredibly rare genetic disorder known as ABCA-3 Surfactant Protein Deficiency.

Wrenn needed new lungs and in September 2010, two months after her family relocated to St. Louis, she received a double lung transplant.

This site has been created as a space for Wrenn's family to keep friends and family updated on Wrenn's progress. She's a fighter, so we expect lots of updates!

Wrenn's parents have good health insurance, but they're still going to have huge medical bills to deal with, so we hope that anyone who can will donate to Wrenn's Baby Breath Fund using the NTAF link above.